SSDI thoughts??

[peanuts]

Hello...i'll get right to the point!!

I was hearing and went totally deaf at age 35 after working 20+ years full time in retail service. I was making $15/hour and always supporting myself.

Then BAM, I am totally Deaf...I hear nothing and my audiogram is well over 90db hearing loss....I applied and instantly qualified for SSDI and managed to live on that for 2+years.

I found a p/t job...it is only 16 hrs a week and it is overnights 2x week...basically I just sit there all nite because they just want more than 1 person in the establishment during overnight hours....the hearing person does all her work, and I just sit there and do menial tasks like sweep/dust etc....

Before my deafness, I was manager dealing with customers/vendors and communicating all the time...now I don't know ASL and cant lip read....being a late deaf person makes me smack in the middle...I cant use an interp to help me...so everything communicating has to be in writing.

So my point is that I work p/t...and I take home after taxes $80/week....this GREATLY helps supplement the SSDI and keeps me from being on the street. Like I said, I just sit there at work overnight and basically am a body there for the paycheck.

BUT when I was hearing I was a manager making over $400/week and could have moved up even higher...now I am a bump on a log sitting for $80/week...

Do you feel I am cheating because I am working p/t even though i am just sitting there for the $80/week? I have applied for other jobs and turned down for everything, so I do not feel ashamed for doing this...

But I read posts here that it is wrong to work p/t and get SSDI....but I feel that you must take what you can get to keep your head above water...

I will never be able to be manager again at $15/hour because my experience work has involved heavy communicating...I cant do that anymore and being late deaf makes it even harder.

So basically, I am asking if you think it's wrong to make the $80/week to keep myself above poverty...its not like i'm doing lots of work....it really is just sitting there and I honestly report 100% of everything! I do not lie or cheat anybody....it is a moral issue and I feel I am doing wrong from reading some peoples posts in forums here?

What are youur thoughts??....And is anyone else here late deafened too????

Peanuts..

 

[Mrs Bucket]

I'm asking you as a person to another person, why do you feel limited in hearing?

You spoke so highly of your skills when you had hearing yet you diminish yourself to a lowly capacity because you lost the majority of your hearing.

Is it because you cannot hear that you need to diminish your working capacity?

Have you invested in a cochlear implant?

It is natural you feel so stuck in the middle of two worlds because the late-deafened person is quite stuck communication wise. There are communication facilitators (CFs) to assist you when you need assistance for meetings or anything communication-wise.

Learning ASL enhances your chances of understanding as well as learning how to lip-read. It is hard to learn how to lip-read at a much advanced age because Deaf babies' brains are like sponges. They absorb everything they see and the quote "Monkey see Monkey do", Deaf babies are able to follow and do what they see.

Hang in there and try contacting your local agency for the CF. I do understand how you feel as being DeafBlind, I am stuck in both worlds- Deaf and Blind.

Smile!

 

[peanuts]

Thank you for your reply MrsBucket....I was VERY proud of my work when I was hearing...my grandfather taught me early on to always have a strong work ethic no matter if you were the President or a Dishwasher---Work is work!

This is why I treat ALL workers the same...I don't believe in denominations.

But yes, it is extremely difficult being Late Deaf---it's like nobody knows what to do with me and it is very frustrating not knowing ASL fluent...(I took 2 yrs of classes and STILL find it very hard!!)

And lip reading forget it---I try and get only few words----so what I do is 2 nites a week sit there at the job and get $80/week to supplemt the SSDI. Reading posts here in other forum threads says I should feel guilty---

BUT, I worked since 1983 until 2005....22 years FULL TIME in communication fields with customer service and also worked p/t jobs on top of that for some years---

So it is me personally that feels I shouldn't feel guilty making the $80/weel fir sitting there as long as it is hoinestly reported and not lying like some people do....

I am constant in fear of SS yanking my SSDI away for making the $80/week...but nowhere can I work as equal to what i did as hearing for 22 years---
And believe me, I wish every day I could go back in time and be hearing again to live the life I had---my life now is that work 2 nites a week....and the rest of the week I stay home in my apt.

I dont go out anymore...I lost ties with friends and family bec they are hearing..I am totally 100% alone in the world now...and that is fine, I have adjusted to that...I am just in constant fear of losing my SSDI bec of making $80/week...

Should I quit that job then???...I am jealous of people born Deaf---like you say, they are sponges as babies and know ASL...can use terps....going Deaf at 35, in prime of life is a cruel joke....a curse to be honest.

 

[Frisky Feline]

Like Mrs bucket just mentioned as above.

If you are able to make under 1,000 per month (4weeks) in 2010 then you would continue to receive a SSDI benefit. I strongly suggest you to see your local SSA to follow up with your part time job and receive a SSDI benefit at the same time. In 2011, the SGA will be the same, $1,000. SSA will ask for your part time job history to keep on the right track of your earnings to make sure that you won't be overpaid with SSDI benefit. They will send you the form called "work activitiy report" SSA 821.

when did you apply for SSDI benefit?

by the way, don't feel like you are cheating. You may need some $$ for buying hearing aid or supplies that are necessary for your needs.

 

[peanuts]

Frisky Feline---

I applied and received my SSDI in 2006---I went Deaf in 2005---My right ear was always Deaf but I never let that stop me...but in one day the left ear just went....all in the span of like 5 mins all hearing vanished.

So the first time I applied for SSDI in 2006, which was 6 months later, i was immediately approved and I managed to survive on it for 2 years.

Then before I went insane just doing nothing after 2 years...(though I did fill my time with ASL classes)...I felt I HAD to do SOMETHING....not only for financial supplement....(the $80/week is set aside for things like dentist/doctors/emergencies while the SSDI pays total my monthly budget for bills...).....Trust me, I am not out painting the town red or anything...FAR from it...the deafness has isolated myself from the world that I am home 24/7 when i'm not doing the 2 nites work.

Nobody knows what to do with or how to act around a late deaf person...we are truly the freaks of society according to the way some rude ignorant hearing people act!

So I drive 45 mins each way to the p/t job 2 nites a week for a measly $80 that keeps me afloat---I dont feel I am cheating government, bec 1, I paid into it for 22 years full time and 2. it is money to keep me afloat---it is not party time money in the least.

And most importantly, I would give anything...ANYTHING to be full hearing again and work full time and live life communicating, making relationships...and being treated like a human being again.

As it is...for me it is just work 2 nites and home the rest of the time...so when i read I should feel guilty for working p/t and still getting SSDI, it makes me upset, because nobody knows the frustration and difficulty and opportunities that are slammed shut on late deaf people.

Maybe I am trying to convince myself over anybody else not to feel guilty...but like I say, I grew up with a very strong work ethic, and imagine how it feels to sit there all nite for $80/;week just to keep me afloat.

It is demeaning to say the least...but honestly, I have tried and tried...no one will hire me to do the job anymore I was qualified at---and i agree---it is a hearing persons job....

but how do you train a late deaf person who is 40 for a new full time career as deaf?? it is next to impossible so that is why I take the SSDI and the $80/weel p/t...but people say I am doing wrong....

 

[Bottesini]

Well, if as you say you would do anything to be hearing, you must have medicaid or medicare, with your SSDI.

Check on cochlear implants. You should qualify and get it paid for and the you will be right where you want to be on the verbal communication.

 

[Frisky Feline]

I believe that the medicare is already on your record that you applied for SSA in 2006. Medicare automatically become eligible to your record within 2 years later while you are still receiving a benefit.

 

[webexplorer]

It is hard for me to say which is right or wrong. It's best for you to make your judgement whether for you to get SSDI or not. Nothing is perfect. Many deaf people don't get promoted because it is simple that they can't talk on the telephone. Of course, we can use the relay service to make some phone calls, but the bosses don't get it right. We should believe ourselves a least that we are right for almost anything. But, we just have to be careful not across the line for some reasons like a boss can be very crabby, etc.

Off topic, regeneration stem cells is not ready for us so we just have to wait for the future announcement.

 

[peanuts]

Bottesini--

Thank you for your reply!....I declined the Medicare part B because I couldn't afford to have to $85/month (at the time) taken out of my monthly SSDI to cover it, so I only have Part A which doesn't cover the CI's.

And I have done HEAVY CI research and it seems it is a grab bag regarding whether it works for people.....I do know it benefits late deafened people more, but I am afraid to take that chance of the operation because if it doesn't benefit me, I read it has very negative side effects on some like vertigo, dizziness, headaches etc of the CI....

So as much as I would love to be hearing again....the fear of the side effects as well as it not even benefitting me, as well as the $85/month out of my SSDI all keep me from doing that.

It's truly like a proverbial "rock and hard place" being between....I look back on my hearing says with a bittersweet feeling---part longing for it again, and other part cursing it because I know what I lost.

I think full Deaf people from birth have it very lucky....because they have that built in, very strongly connected community established within them & their own languange to learned from birth....

It may sound weird, (and I DON"T say this being inconsiderate, but i truly feel full Deaf from birth is NOT a Disability because they are able to function SO much better than a Late Deafened person.)

There's really nowhere for the late person to go...no built in community or language like Cutural Deaf or hearing people...late Deaf is an island all their own.

Ok, now I went off and missed the point which was SSDI and feeling guilty making $80/week and getting the SSDI too..but it is legal, & I report it in full....would I want to do more? Of course!...But choices are either limited to zero for me....so I take what i can get....but don't think I should feel guilty for it either.
I am going by rules and would NEVER make more or try to and try to keep SSDI..I am not dishonest...but please try to remember that disability not only means physical....I may be able to sweep a floor for $80/week....but hearing I did 100X more than that for over $400/week!! I am Dis-abled from doing what i was trained for over 20 years to do!!
(sorry, not mean to shout...)

 

[peanuts]

Off topic, regeneration stem cells is not ready for us so we just have to wait for the future announcement.

Webexplorer---

Do you really believe that the regenerate stem cells are somewhere on the horizon? That is another small reason i put off CI---because if you get CI then they cant regenerate cells because they kill off all nerves that were used for hearing.

Maybe it is false hope----but I do keep the stem cell theory in my mind as a possibility to bring back hearing.

 

[Mrs Bucket]

Peanuts,

Please never feel guilty of working and collecting SSDI. You are doing what you have done almost all of your life.

my grandfather taught me early on to always have a strong work ethic no matter if you were the President or a Dishwasher---Work is work!

So it is me personally that feels I shouldn't feel guilty making the $80/weel fir sitting there as long as it is hoinestly reported and not lying like some people do....

I am constant in fear of SS yanking my SSDI away for making the $80/week.

What you have is the inner conditioning that your grandfather taught you; keep working hard and you will receive hard-earned money. This is something that has been instilled into your psyche and it's quite hard to get rid of.

You are not doing anything wrong and just like you said, as long as you keep reporting your supplementary income to SSDI, you are doing your job and quite honestly if I may say so.

 

[AmeriplanMama]

DONT feel guilty! You have paid into the system and you qualify to get SSDI. You are doing all the right things.

 

[posts from hell]

Get a higher managerial position. They work out of emails.

And you can use IM Relay to make calls.

 

[deafgal001]

Wirelessly posted

Get a higher managerial position. They work out of emails.

And you can use IM Relay to make calls.

I think that's a good idea. More opportunity to the deaf when people can see that deaf can do it.

 

[deafgal001]

Wirelessly posted

DONT feel guilty! You have paid into the system and you qualify to get SSDI. You are doing all the right things.

Yes.

SSDI is really her money. People who work less than five years can't get SSDI. At least that what they told mom when she had cancer ( she only worked for a.few years in her entire life) we told her to go see if she can get SSI instead but she never around to it.

 

[Frisky Feline]

Get a higher managerial position. They work out of emails.

And you can use IM Relay to make calls.

Yes. This is how lots of deaf people have been fighting for their rights to do the essential job function if they feel they can do it then they can do it. Some of them have good union representative in their workfield who can make it happen by adjusting to the job such as using email or im instead of using the telephone and go on.

 

[posts from hell]

If they dont give you the job, sue them for the opportunity to show that they can do the job...

That is the trend around here.

 

[MidnightSun]

Peanuts..I am in the same boat....worked management, teaching and workshop facilitating
then woke up stone deaf..so...lost my job (contractual with feds) thank goodness I had my writing to fall back on...NO! don't feel quilty..and dont stop looking fir a better job...
just remember there are limits to what ssdi ppl can earn. lost my hearing 7 yrs ago..did you know that Sprint now had a pager that has speech to text..wowie..yes its about $200 but I dont need the phone and alot of the other applications so service is cheap. It had made my life a breeze..now I sit it down when I am talking ( It only does a line at a time tho) but since I speak perfectly..i just look at. the text and talk back its 4G so really fast and i can now talk to my doctor and know what the heck he is saying..I wrote a letter to Sprint suggesting they give the deaf a discount..Hmmmmmm

 

[peanuts]

Thank you all for the replies & advice---they are very much appreciated and helpful!!

Midnight Sun---the speech to text device---is this a phone/pager or a device you walk around with that captures peoples speech to text when communicating to them in person?

I will Google that for more info----What would be GREAT for Deaf would be a portable device to carry with you that captures people's speech and you can read it in real time----kind of like portable captioned always with you...

With all the gadgets they make today, surely they can make this for us don't you think? What a lifesaver that would be for me because from experience, I have learned that hearing people HATE writing and more often cast me aside than make the effort to communicate----so frustrating to be made to feel not worthy of mere communication!

And a device should be FREE for Deaf to utilize---why make Deaf pay for something hearing people get built in their bodies for free? (hearing & communication abilities?....I tell everyone all hearing people should experience being stone deaf for a week and try going about their daily lives---most wouldn't last a day before going crazy!

And yes, I never work more than that 2 nites/week and no more than the $80. I know SSDI has limits and I don't abuse that----and I wouldn't want to work more than that because the 2 nites are alone are stress enough for me.

It is a 24 hr open business and many times customers will come up from behind me apparantly speaking to me, and when I dont hear them, they feel it's their right to POKE me from behind and giving me a near heart attack!

I jump out of my skin many times thinking gun in my back and always give nasty looks to these people----it's just common courtesy to NOT poke strangers from behind---whether they can hear you or not---you just don't do that---or is that acceptable??

Then of course THEY get mad at ME when I point and direct the person to the hearing employee for whatever they wanted that was so important to poke me in the back!!....

Deafness is an invisible disability and that's what makes it extra difficult to live with when out in the hearing world---people just don't see it initially and poke poke poke lol.....not right.....ok end my little rant.....but thank you again all for the replies!!

 

[deafdyke]

why do you feel limited in hearing?

You spoke so highly of your skills when you had hearing yet you diminish yourself to a lowly capacity because you lost the majority of your hearing.

Is it because you cannot hear that you need to diminish your working capacity?

Have you invested in a cochlear implant?

On the other hand, I DO think that late deafened (or late disabled people in general) do struggle with accepting the loss of a sense or abilty.
But yes, I agree with everyone else. There are ways you can adapt to not being able to use a phone. Have you contacted VR? Many states have VR counselors specificly for dhh (including late deaf) people.